Read More

"Watching Spencer live with this condition is a horrible thing to see as a mother and there is absolutely nothing I can do about it."

Klippel-Trenaunay Syndrome causes a difference in the circumference size or length of one leg, known as asymmetric limb hypertrophy.

This means it is extremely difficult for sufferers to find suitable shop-bought footwear and they must instead rely on custom-made orthotic shoes.

Spencer Kristianson wearing custom made shoes (Image: Mercury Press)

While some types of orthotics are available on the NHS, Amber said the specially-made footwear Spencer needs - which help him to walk normally - would not be freely available with the frequency he requires.

She said while her son has done well to battle the effects of the condition, with the shoes having a price tag of more than £300 his illness is pushing her finances to the limit.

Amber said: "He gets shoes every six months but by four months I'm on the phone because I know what is coming because he is a six-year-old and they just get wrecked.

"And it's such a rare condition and nobody seems to know about it, I certainly haven't met anybody near me who has the condition or as kids who have it.

Read More

"It's massive for Spencer and he does so well to put up with so much. It would be hard for me as a 26-year-old to deal with it, let alone a six-year-old."

Spencer's specialist shoes are provided by the Steeper Group, a firm who make orthotics shoes.

A spokesman said: "Within our orthotics services where we treat Klippel-Trenaunay Syndrome, we prescribe specialist orthotic footwear that is custom-made to accommodate the size difference of the affected lower limb.

Spencer Kristianson's feet (Image: Mercury Press)

"The footwear may often be longer and wider on the affected side to accommodate these differences in limb size, and in many cases we need to add a shoe raise, to ensure the shorter limb is accommodated, the pelvis is levelled and there is no long-term detrimental effect on the spine.

What is Klippel-Trenaunay syndrome?

Klippel-Trenaunay syndrome may be suspected in children who have a port wine stain covering an arm or leg, but the diagnosis may not be confirmed until the child is walking and the varicose veins and limb hypertrophy are more obvious

The syndrome itself cannot be treated and is a life-long condition but the symptoms associated with it can be improved to a great extent